This is my first post here, although I have been lurking since I was diagnosed. I am almost 3 months out from 35 rad treatments for SCC HPV+ of my tongue. I did not have chemo, as I was stage 1. Now, I am MISERABLE! I am in so much more pain now than I was during treatment. I am losing my mind, and was hoping you guys could give me some advice or direction.
About a month ago, my tongue started developing new ulcers and hurting more. My ear started hurting, and after a visit with the ENT he said it was referred pain from my tongue. By the end of that week my neck was swollen and painful to the touch, I couldn’t eat, I couldn’t talk, and it hurt just to swallow my own spit. Long story short, I was told I had a staph infection in my neck. I was on Augmentin for 17 days. My neck swelling reduced but the tongue ulcers grew together, and some kind of white covering has been taking over the area. The ENT says it’s a scab, and that scabs look very different in your mouth, but is still concerned by the way it is growing. They said I need a biopsy, but plan to wait until after my PET scan results. I am now on Doxycycline for another 10 days.
My scan is in 2 days, but the reading of results will be the next week. I don’t think I can make it that long!! I am in so much pain!! I don’t understand why we need to wait an extra week to do a biopsy. I was told not to take Advil anymore because it can create ulcers, but Advil was the only thing helping my inflammation! Tylenol and Tramadol don’t do anything to touch the pain. The other opioids make me vomit. I have been using so much viscous lidocaine and magic mouthwash that I’ve also been throwing up from swallowing so much. And of course the vomit hurts my mouth more. I also just feel really unwell, and my neck hurts. I use all my strength to just take my dog outside, and then I just lay in bed. I feel like I have been going to all of my different doctors ( oncologist, radiation oncologist, ENT, a second ENT, the hospital, urgent care) and nobody is actually helping me.
Has anyone had this kind of issue after treatment?? I don’t know what to do anymore, and I’m at the end of my rope. I feel so desperate for help. Does anyone have any advice? I don’t think I can make it one more week like this.

Hang in there Bad_Kitty,

I can't offer any advice, I have not been there, I can only express sympathy for your described suffering, as I have not had radiation. Hopefully Nels will be on here soon and see this as I know he has been down your path. I have not had radiation.

The infections complicate things even more, sorry you are experiencing that.

Regarding the PET and delaying the biopsy until after the PET, they may want to have it done so they can plan out biopsy locations.

Hopefully some of the stalwart veterans who have been through similar ringers as you are in now may have some tips.

Can you do ice chips or something like that? Or maybe consult with a pain management specialist? Or a palliative care specialist? (I just rechecked, and they don't just do terminal patients like my Dad, they do help people who are suffering immensly with curable diseases too).

My Dad's Palliative Care physician was an oncologist for many decades and finished out his career in palliative medicine, and he was a God send.

I hope you find some things that work for you and you can start to notice some improvements.

Sincerely,

Chris

Hi Bad Kitty,

Welcome to OCF and I am so sorry to hear of your cancer and ongoing problems. As Chris noted, I had surgery and radiation about 5 years ago for stage 4 on my tongue. I had to learn to be very patient with radiation recovery. For reference, it took over a year before most flavors felt close to normal. Some, like sweets, I got back in a few weeks/months. Spices and complex flavors took much much longer.

As for swelling, infections, and pain, keep staying on top of it and communicating with your doctors. Find anything you can process best you can and focus on jamming calories. Mixing with a blender or Vitamix (think OCF gets a discount) can help. If you can not do liquids, which yours has gotten that bad, you should stay in close touch with your doctors and consider a PEG tube or nasal feeding tube. I had a nasal feeding tube after surgery. It was a pain but it worked.

I was fortunate and only had minor infections during radiation treatment and was able to keep processing food even though most of it tasted like dirt. I tracked my calories trying to hit at least 2000/day. I would give myself a small treat (favorite walk, favorite snack, etc) if I hit my numbers.

Please keep us up to date. Stay safe and keep the faith. Better days are ahead and we are with you.

Nels